prednisone veterans

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/19/2008 3:25 AM (GMT -7)   
I wanted to ask all of you if you are having a mini-flare, do you decide to take a short round of pred without consulting with your doctor? And if so, what dosage do you take and how do you taper?
 
I asked my doctor if I can take a round of pred to put me out of my mini-flare, since Entocort is not my miracle drug, but he told me that if I decided to start pred, it would require 1 1/2 month of tapering.  Last time I was started with 80 mg per day, but that was because I was very sick.  I don't want to take such a high dosage, just the minimum one.
 
Thanks,
Christina

Missmissy
Regular Member


Date Joined Oct 2006
Total Posts : 237
   Posted 9/19/2008 4:22 AM (GMT -7)   
Good morning, athensgirl~Sorry to hear you are going into a flare. I have been on pred a time or two, and I know it's no picnic. I really think you should go by your doctor's instructions when it comes to prednisone. He or she should be informed of your flare, especially if it's bad enough that you're considering self medication. That's probably not what you wanted to hear, but that's my gut feeling. Anyone else?
Asacol 1200 mg. 3 times daily, Rowasa enema AM & PM, Prednisone 40 mg. daily for 2 weeks, then taper,
probiotics, lots of hope and prayers! 51 years old, diagnosed formally 10-06. If it doesn't kill ya, it'll only make you stronger!


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 9/19/2008 6:49 AM (GMT -7)   
I've been on pred for 15 years, so I do take the liberty of dosing myself when I think I need to. I am not a doctor, I cannot tell you what to do or what dose to take. Your own doctor would have to do that. I will just tell you what I do. Depending on the severity - I start at 20mg and stay for about 4 days and then drop by 5mg every 4 days or so. So in a little over 2 weeks I get a quick boost to calm things down. It really depends on how I'm feeling.

You should ask your doctor why it would take 6 weeks to taper. Ask him what dose he would start you on and how quickly/slowly he would have you taper. Maybe there is a medical reason for him to want you to be on the meds that long. Or maybe because you are on Entocort (also a steroid) there is need to approach this more carefully. Ask him your questions and then go from there. I think that if you submit a reasonable plan to him, he should at least be willing to tell you why he thinks you can or can't. Hope you feel better!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/19/2008 7:01 AM (GMT -7)   
As Stef17 said I cannot tell you what to do or what dose to take, but I will tell you what I did recently. I had the beginnings of flare recently, I knew I was starting to flare because it had been going on for over a week. I tried to call my GI, but he was on vacation. So I went to my PCP and told him I was starting to flare and wanted to do a short burst of Pred. Well in my charts it states "Prednisone causes patient severe hypertension". (But its when on high doses for a longtime) So naturally my PCP didn't want to give me Pred and was not familiar enough with Entocort to prescribe it. So I told him straight out, I have had this disease for 33 years and I know what works best to stop my flares, and a short burst of Pred always works for me. He knows I know my disease well, so agreed with my quick burst.

I started at 25 mg for 2 days, 20 mg. for 2 days, 15 mg for 2 days, 10 mgs for 2 days, 5 mg for 2 days. For me, it worked like a charm, as I knew it would. I do have a mild form of Crohns by the way. But I do consider that I had my doctors okay to do this short burst of Pred. Good luck!

I did have the usual bad joint pain for a week after I finished, but I am back in my remission now.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 9/19/2008 5:27 PM (GMT -7)   
Hi Athensgirl,
I do pretty much what Stef and Nanners have said. I hope this flare does'nt last too long for you. Good luck.
Jo

meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/19/2008 5:51 PM (GMT -7)   
Hi Athensgirl, if it's only a mini flare maybe there's another way to handle it? I'd definitely ask your doctor before starting any treatment. Personally, I hate pred so much that I would rather not take it unless I have a blockage! I try everything else first. It's such a dangerous drug and has such a crappy effect on my body sometimes I'm not sure it's worth it. Double edged sword. The one time I've had to use pred for a prolonged period of time it affected my psychological and physical state so much it took a while to recover/still recovering. I really feel for those who have to take pred frequently.
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/19/2008 6:03 PM (GMT -7)   
It depends on your definition of mini-flare really..
I have gone on it without consulting my doctor though. I started on his orders with 40 mg a day so I chose 20 mg on my own. It seemed to work for a little while, but I upped the dose when it seemed necessary. My GI didn't seem to have a problem with this.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Panayo
Regular Member


Date Joined Jan 2003
Total Posts : 246
   Posted 9/19/2008 6:07 PM (GMT -7)   
Athensgirl,
 
     If I was having a mini--flare (which sometimes happens), I usually will take 20 to 25 mgs of pred. in the morning and again when I go to bed.  I do this for about 2 or 3 days and everything gets back to normal.  Always works for me.  Also, I never taper off of pred. If I've only been on it a short time.  The Adrenal Glands don't work that fast in shutting down.
 
     That's what I do, but of course I've had Crohn's for 54 years along with all the goodies that go along with it. 
 
     The only reason I see a doctor is when I need a refill on my prednisone.   He Trust me and knows me very well, and decided long 
ago to let me self medicate.  I even use 5mgs of Pred. daily for maintenance along with azulfidine. 
 
     Respectfully,

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/19/2008 9:42 PM (GMT -7)   
I don't self-medicate without my doctor's permission. No way. Absolutely not.

They also said it was really important that I didn't, and made me promise not to. They seem to think I'm too close to getting some of the really serious consequences of long-term steroid use.

Whether you self-medicate or not is up to you, but I don't think it should be done lightly.

I.
Co-Moderator Crohn's Forum.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/20/2008 1:41 AM (GMT -7)   
what they said.

Panayo! where you been hiding? check in more often!
randynoguts 



     http://www.geocities.com/randynogutsweb/


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 9/20/2008 7:27 AM (GMT -7)   
I don't do anything without contacting my doctor.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
No Surgeries
 


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2689
   Posted 9/20/2008 12:50 PM (GMT -7)   
I haven't no. I do have some pred on me though. I think if my lip swelled up HUGE again, and it was a weekend, I'd reach for it. But I'd be calling my docs on Monday. I don't like to self treat though normally.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


Panayo
Regular Member


Date Joined Jan 2003
Total Posts : 246
   Posted 9/20/2008 2:08 PM (GMT -7)   

     Ivy6 -

     I never tell anyone what to do about Crohn's, I only tell what I do.  The only difference I can tell between the two of us is that you wait until something goes wrong before you contact a doctor or go in at different times for an examination at which times you are told you need to have this or that done or see me in six months.  That's just not good enough for me.

     After all of the research I've done in the 54 years of Crohn's, I consider myself an expert in how to handle it (as far as my own body goes).  I am a true believer in preventive (self) medication for myself since 1989 (19 years now) without any serious or even remotely serious problems with Crohn's.  I actually consider myself to be in complete remission for all of those years.  But, before that I spent 35 years of my time battling Crohn's, working, etc.  During that time, while always heeding my doctors advice, I also had 9 surgeries including 6 major resections which eliminated 40 percent of my intestines.  Now, if you have done research on Crohn's, you know that your body can still absorb enough to sustain growth, etc. with 60 percent of your intestines but if you lose 70 percent or more, your in trouble, so I couldn't afford to lose anymore intestines.

     Now, we know  that nobody knows for sure what exactly causes Crohn's and we know for sure that there is no cure for it, the only thing we do know for sure is that Crohn's is an inflammatory disease and can spread deep through every layer of tissue in the affected areas

     Inflammation was the key word for me.  My research told me that my Adrenal Glands produced between 8 and 9 mgs of Cortisol  which should be enough to prevent inflammation in the normal body.  a person with Crohn's doesn't have a normal body as far as I am concerned or they wouldn't keep getting inflammation so I decided to help the Adrenal Glands with a little prednisone every day or every other day sometimes just so they wouldn't close down.  It Worked!!! no more inflammation for me except once maybe every two or three years when Crohn's tries to bust thru and that's when I go on the two or three days of extra predisone that I was talking about.

      So, Yes, I think you and LBJ or right to contact your doctor about everything you do concerning Crohn's, but in the back of my mind I wonder if any of your doctors has told you to be in the office some morning between 8:30 am and 9:30 am to have a blood draw to check and see if your Adrenal Glands are working properly(the test is only good if it's done early in the morning).  I consi-der the Adrenal Glands a very important part of treating Cronh's disease, and I'll make a wager that less than 10 percent of the people on this forum have ever had them checked unless they asked for them.  They play such an important part in our bodies and affect almost every organ and tissue in the body. 

     By the way, I  never missed a day of work unless I was in the hospital for surgery, I even set a time limit on surgery, i would be out for no more than ten days, four days in the hospital and no more than six days recovery time, I made the rule and I lived by it,that's how I became mgr. of a large firm in Atlanta, traveled the world (boy, that would be hard, calling my doctor from Greece for advice or somewhere else).  and as far as serious consequences for long term steriod use go, I'll be 81 years young in Feb., and if they are going to show up they better start pretty soon.  If I had known I was going to live this long, I would have taken better care of myself. 

     My mottos  "People who don't dare, never get anywhere"  and from Ted Turner, "Either lead, follow or get out of my way"

     Respectfully

  


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/20/2008 2:40 PM (GMT -7)   
I do pretty much what Nanners does. My doctor has told me I know as much about prednisone as he does and as long as I keep him informed of what I am doing he is fine with me doing short tapers to keep flares under control. He has given me Rx's for 20mg, 10mg, 5mg and 1mg so that I can taper properly. I usually try to wait a few days to see if my body will pull out of it on its own because I hate having to go back up and start tapering again. But like everyone else has said, you should check with your doctor and see what he/she has to say. I've been at this for a long time and have my doctors consent and I do keep him informed. Also, I make sure that my husband knows how much prednisone I am taking just in case of any kind of emergency situation. Since the record I keep in my purse wouldn't be updated for a short burst.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/20/2008 3:01 PM (GMT -7)   
You might try making a survey that doesn't force the person taking it to answer only questions about enteral nutrition and their experiences with it seeing as how many of us don't have that experience. Kind of odd.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 1:22 AM (GMT -7)
There are a total of 2,732,429 posts in 301,020 threads.
View Active Threads


Who's Online
This forum has 151182 registered members. Please welcome our newest member, Sean C..
194 Guest(s), 2 Registered Member(s) are currently online.  Details
THE HAPPY TURTLE, pressurehead


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer